Feeling sad today.
Before Macsen's birth and before his first and 2nd surgeries I did lots of research. I studied up on the Norwood, the Glenn and Hemi Fontan. His next surgery will be the Fontan. Click here if you would like to a watch a video explaining this surgery(http://www.youtube.com/watch?feature=player_embedded&v=mu_amCCD8gg)
Yesterday, another heart mom shared this webcast presented by one of the cardiologists from the Sibley Heart group in Atlanta. He follows adult heart patients - ones who were born with heart defects and have gone through the 3 staged surgeries, like Macsen. Since the surgeries are only about 25 years old his patients are some of the first survivors. They are in their 20's and many are starting to show real signs their bodies and hearts are rapidly declining. These surgeries are palliative but not a cure - they relieve some symptoms but don't fix his heart. Some of the leading pediatric cardiologists in the country refer to the circulation created by theses 3 surgeries as "failed circulation." Deoxygenated blood is rerouted so it can passively go back to the lungs - alleviating some of the work the already stressed heart has to perform. But when you couple an already overworked heart and it's rising pressure with a passive system trying to get blood from the lower half of your body to your lungs you get back up - blood backed up to your liver, kidneys, bowels.
Don't watch this video if you are the type of person who would rather focus on how well Macsen is doing and not dwell on his future and what he will likely face. No shame in that - it doesn't help anything to worry and I completely understand. I almost wish I hadn't watched it. Except..... except it just drove home for me how much work still needs to be done to develop better ways to help babies like Macsen. More research needs to be done, more testing, more innovations, more funding. They have come a long way - 30 years ago our only option would have been to bring Macsen home and try to fit a lifetime of love in the days or weeks until he passed away. Now we have hope and he's doing so well. We just need to keep pushing! Already with stem cell research and the (albeit theoretical) addition of tiny impellers or pumps to help move the blood along we have an inkling of what may be developed. In 20 years who knows what innovations will be discovered. We are depending on them for our son and they can't come soon enough.
Click here to view the webcast. FYI - It is almost an hour long and it made me cry. Just sayin'
http://vimeo.com/12052131
Just think of all the advances in science and technology that we have seen in our lifetime already, heck, in our girls' lifetimes! Who knows what they will figure out in the next 30 years :) Hope and faith! And love and squeeze that little nugget.
ReplyDeleteAbsolutely keep the faith! Medical advancements have been astounding and I am certain Macsen will have a much better prognosis when he is in his 20's. Think of it this way, 10 years ago, CF patients had a life expectancy of late teens to early 20's. Now, there are lots of variables, but - CF patients should be able to live somewhat normal lives through their 30's, at which point lung transplant may be required. With a lung transplant, life expectancy is extended. So - it isn't a CURE - but, advancements have provided CF patients much more TIME to get as much out of LIFE as any other young person. By the time a teen with CF gets into their 30's, I fully expect to see as much advancement as we've seen in the last 10 years. I will continue to push for advancements, awareness, funding and research for CF and for CHD's. And I will not wallow in dismal "what ifs" because I fully expect positive results. I love you, thanks for sharing, it gives me direction for my prayers. Love you,
ReplyDelete